Why we need an EU Childhood Cancer Advisory Board

The European childhood cancer community is calling for the creation of a multi-stakeholder body to help cure more children, cure them better and reduce inequalities say Carmelo Rizzari President of the European Society for Paediatric Oncology (SIOP Europe) and Gilles Vassal Board Member of SIOP Europe and Chair of ACCELERATE
Photo credit: San Gerardo Hospital, Monza, Italy / Source: SIOP Europe Strategic Plan Update (2021 – 2026) https://siope.eu/media/documents/siop-europes-strategic-plan-update-2021-2026.pdf


28 Jan 2022

A year ago, the European paediatric cancer community welcomed the European Commission’s Communication on Europe’s Beating Cancer Plan (EBCP). Today, our attention is increasingly focused on its implementation and the importance of working with other relevant EU programmes, such as the Horizon Europe Mission on Cancer and the Pharmaceutical Strategy for Europe, in order to achieve the greatest benefit for children and adolescents with cancer.

Each paediatric cancer type is rare but taken together childhood cancers represent a major burden in Europe, with over 35,000 new cases and more than 6,000 young lives lost each year. As such, they are the biggest cause of children’s death by disease above the age of one in the region. Inequalities in access to the best standard treatment, care and research lead to a 20% difference in survival rates across Europe, and the pace of therapeutic innovation has been insufficient to address the needs. Furthermore, an estimated 500,000 childhood cancer survivors in Europe are affected by adverse long-term complications and are facing barriers in access to appropriate follow-up care.

“The only way to truly capitalise on the momentum for children with cancer on the EU agenda is by having a go-to multistakeholder EU Childhood Cancer Advisory Board supporting the implementation of all relevant EU initiatives” Gilles Vassal, SIOP Europe Board Member

A much-awaited strategic document and a milestone for advancing cancer control in the EU, the EBCP includes a section dedicated to childhood cancer. The EBCP outlines the measures to serve the unique needs of young patients and survivors as well as cross-cutting initiatives which are equally relevant to paediatrics. At the same time, there are further EU policy areas that resonate strongly with the current needs. For instance, the Pharmaceutical Strategy for Europe encompasses the revision of the Paediatric and Orphan Regulations, which holds the potential to boost access to novel therapies and address the underserved needs in childhood cancer. The Horizon Europe Mission on Cancer is set to be instrumental in sustaining and reinforcing academic-driven research, thereby fostering progress across the entire patient pathway.

The magnitude and particularity of the challenges in childhood cancer control require an efficacious implementation of Europe’s Beating Cancer Plan and its spotlight childhood cancer section. Furthermore, there is a need for a high degree of coordination between other relevant EU initiatives. To fully capitalise on the synergies between the EBCP and the other EU working streams, the European Society for Paediatric Oncology (SIOP Europe) and Childhood Cancer International – Europe (CCI Europe) call for the creation of an inclusive multistakeholder EU Childhood Cancer Advisory Board.

Proposed concept of an EU Childhood Cancer Advisory Board | Source: SIOP Europe

The purpose of this Board would be to support the goal-driven, successful and coherent implementation of actions and projects relevant to children and adolescents with cancer across Europe’s Beating Cancer Plan, Horizon Europe and the Pharmaceutical Strategy for Europe as well as other major initiatives such as the European Health Data Space, Health Technology Assessment (HTA) Regulation, General Data Protection Regulation and Cross-Border Health Care Directive. This would support the EU in reaching the overarching goal of curing more children with cancer, curing them better and addressing inequalities.

“I am committed to realising our vision to cure more children, cure them better and reduce inequalities. An EU Childhood Cancer Advisory Board would be critical in making this objective a reality”
Carmelo Rizzari, SIOP Europe President

Building on the existing long-term cooperation among professionals and parents, patients and survivors in the paediatric cancer sector in Europe as well as the involvement of a broad range of actors including industry, regulators, health technology assessment agencies and intergovernmental organisations, the Board would add substantial value by:

  1. Connecting stakeholders with expertise in policy and programme areas of relevance to childhood cancer to achieve synergies for a ‘childhood cancer in all policies’ approach
  2. Advising on the unmet needs to help shape the implementation of tailored actions across all European initiatives to make tangible progress in childhood cancer for a maximum impact benefiting Europe’s youngest citizens
  3. Ensuring continuity with existing European networks and collaborative groups in the paediatric cancer sector
  4. Mobilising parent, patient, and survivor organisations from the grassroot to European levels

The European Parliament’s Special Committee on Beating Cancer also called for a transversal coordinating and advisory body for childhood cancer within its recently adopted flagship report.

SIOP Europe and CCI Europe trust that following the landmark adoption of the EBCP, the EU Childhood Cancer Advisory Board can also become a reality to drive optimal implementation. We look forward to engaging with all stakeholders to take urgent steps towards a brighter future for children and adolescents with cancer across Europe.

International Childhood Cancer Awareness Day

SIOP Europe invites you to register for the International Childhood Cancer Awareness Day (ICCD) 2022 – EU Policy Webinar on 2 February 2022 (12:00 – 14:00 CET).

This year’s event will be dedicated to the impact of the General Data Protection Regulation (GDPR) on childhood cancer research.

Find out more: https://siope.eu/iccd2022

This article reflects the views of the author and not the views of The Parliament Magazine or of the Dods Group